CNS is both a community interest company and a user-led organisation, working to promote social justice and equality, personalisation and coproduction.

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Mar 30 ILF Lament

It is often said that the Queen (by whose permission you are here today!) is special because she has two birthdays. But in fact, there are another 18,000 people who have two birthdays: the day they were born, and the day they received their first ILF payment.

My first ILF birthday was in 1988, when a government with vision and compassion introduced the Independent Living Fund. For people with high support needs, it was a great birthday, changing our lives overnight: we became part of our communities, went to college, got jobs, made friends, and generally did the things that non-disabled people take for granted. I met Mike and Darren who have become not only my personal assistants but also life-long friends.

ILF was a springboard for a new life, whereas Direct Payments are a safety net. Direct payments help you out of bed in the morning. ILF gave you a reason to do so. My fear is that we are going back to the days without hope or purpose.

In 1964, I became disabled. Not by being involved in an accident or being ill. I became disabled with one simple sentence from a consultant: “Mr and Mrs Punton, I am sorry to have to tell you but your child has got cerebral palsy.” From that moment, society believed that I had no purpose or future and prescribed special school followed by a life sentence in an institution. My parents disagreed, and I remember my Dad saying, “well, it is not rocket science that you shouldn’t let other people govern what you do.” And my Dad should know, because he was a rocket scientist!

But even so, I was still forced to live the life that society prescribed.

Then, in 1988, three things happened. Thirdly, I got my first job. Secondly, I moved into my first flat. Firstly, and probably most importantly, I applied and was accepted for ILF.

Without the first, I am sure the other two would not have been achievable. The ILF changed my life. It gave me access to the wider community of Birmingham and beyond. It allowed me to meet fellow like-minded people who taught me how to see myself in a different light and introduced me to the concept of social justice. It allowed me to work, start my own community interest company, and empower other people. I even stood as a candidate for parliament at the last election. Fortunately, the wisdom of the people prevailed! But because of ILF and the British democratic process, it is possible for me to sit here and speak to you. The question is, will Robert Punton the younger be able to do the same?

ILF has changed our lives, and how we see life. I am desperately sad that the decision of 2010 meant that an opportunity open to all was suddenly closed, which has led to it being labelled elitist. That was not the original intent or purpose.

On the 19th June 2015, we received our final instalments of ILF. My concern, and the concern of thousands like me, is that come the first of August, the restrictions of the new definition of community care, will not allow me to continue to participate in my community and I will find myself returning to the lifestyle of pre-1988. If you will allow me a bit of poetic licence, I do not wish to return to the shadows of society but want to help light my community.

I would like to finish with a quote from Antoine De Saint-Exupery “The notion of looking on at life has always been hateful to me. What am I if I am not a participant? In order to be, I must participate.”